Can the local hospital and dietetic department rule against a child's best interests?

[Sneezecakesmum]

I'm thinking Childrens act.

Enquiring on behalf of a friend. Her DD has a gastrostomy tube (direct into stomach) for feeding difficulties. The NHS provides milk formula feeds but her DD (5) vomits and is was not thriving.

Friend changed her formula to food blended and thinned and put down the tube. DD blossomed, put on weight and was totally healthy on a diet of real food. The dietician won't allow the blended food into school so friend has to go into school every day to feed her DD. MP wrote to health minister who said it was local policies and couldn't intervene as no national policy in place.

There are a few objections which can all be met by my friend. The british diatetic association don't advocate this form of feeding but accept it can be done if certain safety procedures are met. Ditto the tube manufacturers . The school will accept whatever the dietician says but she refuses to allow it.

There are other dieticians and schools who feed with this method, so there is a precedent.

Is there any legal avenue that can be persued now the MP one has not worked.

Who employs the dietitian? Has she tried making a complaint to the trust the dietitian works for? The first step is usually to contact their PALS (Patient Advice and Liaison Service).

So the situation is that the school have one or more staff member trained in giving feeds this way, the school and the staff member/s are happy to so this, but cannot do so solely because of the nature of what is in the feeding bag?

Is the HCP who is currently blocking this the most senior person on this child's team? I'm expecting the answer 'yes' because I would assume that your friend has exhausted all possibilities of a second opinion (possibly from someone more senior in the medical hierarchy) that would override the decision as it currently stands.

So the situation is that the school have one or more staff member trained in giving feeds this way, the school and the staff member/s are happy to so this, but cannot do so solely because of the nature of what is in the feeding bag?

Is the HCP who is currently blocking this the most senior person on this child's team? I'm expecting the answer 'yes' because I would assume that your friend has exhausted all possibilities of a second opinion (possibly from someone more senior in the medical hierarchy) that would override the decision as it currently stands.

private dietitician?

there should be a national policy
this is from an nhs trust www.bfwh.nhs.uk/visiting/patleaflets/leaflets/BTH216%20-%20Eat%20well%20with%20blended%20diet%20-%20Texture%20C%20(v4).pdf

This information has been produced for Blackpool Teaching Hospitals
NHS Foundation Trust by state registered Dietitians and Speech and
Language Therapists]]

start a petition?
www.change.org/petitions/multnomah-education-service-district-gresham-barlow-school-district-to-support-bonnie-eating-blended-food-via-her-g-tube-at-school

Thank you.

I am not sure whether she has contacted PALS, but I will suggest it. I have already said contact Healthwatch. The dietician is part of the diatetic department, so maybe it's a blanket policy from the head? I agree it's a case of going to the hospital management now.

There is no medical 'evidence' as such to support this method of feeding as it's not been researched as such. Apparently thousands of years of humans eating 'food' doesn't count! The tube manufacturers aren't against it and we have evidence to support this in our group. There may not be evidence (other than anecdotal) to support this but the BDA say it can be done and how to do it safely. I remember her saying her surgeon and paediatrician are quite happy with it, but no one challenges the 'experts' in the diatetic field. Not even the doctors!

I don't think the school would accept a referral from a private dietician because they are working within the confines of the local authority.

The frustrating thing is I successfully argued the case with our local hospital trust and we now have blended food in school. All my 'evidence' is available to DF but the trust just won't listen!

We have started a petition .

I'll read through the policy thank you, but I suspect this is where the trouble lies, individual trusts interpret the policies in their own way.

I will check with DF how far up the chain of common she has gone and where the blockage is.

Is there an specific part of the childrens act which relates to health issues? Just for added ammunition.

Many thanks for the input.

Cestlavie..... So impressed! The Blackpool trust is advocating blended diet! Will send this to DF and ask her to contact them to see how they reached this outcome.

Just realised it's not for tube feeding but the nutritional advice is useful as that is one of the objections.

I suspect that there is an element of safety and wanting to cover backs going on. The prescribed feeds come in sealed bottles or bags which have been prepared in sterile conditions. Mostly they don't need to be refrigerated unless opened.
They have no idea how the home blended feeds have been made or stored. They could be feeding something that is inherently unsafe because something was off or it has been sitting in a warm place too long. Also there could be anything in there.

So yes. Some diatetic departments can say blended diets are fine and won't clog tubes etc but asking someone to give something that they can't be sure is safe (because it is not in a sealed bottle) may be an ask too far.

Starfishmummy. When a nt child is sent to school with a packed lunch exactly the same applies. Nobody questions the food risks there.

Putting food through a syringe is no riskier than sitting a child down and giving the packed lunch their parent had prepared that morning. Packed lunches are not refrigerated in school. Food is not sterile and never has been. All we feed is food.

If you read the contents of sterile feeds (the human gut btw was not designed to eat sterile foods, it reduces the good gut bacteria) it is homogenised fats, corn syrup, artificial vitamins and minerals and no naturally occuring fibre. As opposed to organic, high quality, varied and nutritious ingredients. Probably a better diet than other children because broccoli refusal is not an option

A parent tube feeding a child blended diet (almost always because the child is vomiting frequently, constipated, needing medication for reflux and constipation) is more likely to take extreme care in preparation and content. It takes dedication to go to all the trouble and expense (high sped blender around £400, good quality ingredients as opposed to free formula) and they are less likely to cause illness with food prep.

The safety element is one of the objections given by the dietician but I have done a food hygiene course and can guarantee high food standards as can DF.

Wrt asking the TAs to give blended food we have signed a disclaimer taking responsibility for the safety of the food. They have been trained in hand hygiene by the dieticians for formula feeds so we have just replaced them with blended food.

There is no reasonable argument DFs dietician can give for refusing BD for her child, no argument ^ that cannot be refuted, which is why we feel she needs some legal argument on her side.

But the child is helping themselves to a lacked lunch it is not being given.

We have always been told that for a member of school staff to give ds a tube feed they have to either be volunteers or to have it written into their contract - difficult if the person is already employed.

I would also point out that blackpool is not advocating a blended diet in the sense of it being pushed down a tube as you mean. It is talking about food that is blended for oral eating. I know its not youngest posted the link but I don't think it will helps your argument

The TAs employed at school don't have specifics written into their contract re tube feeding just care of a disabled child with adequate training. The training is given by the gastro nurse so there is not an issue with administration. They are not volunteers. Therefore at school it is not an issue.

Children taking a packed lunch to school are feeding themselves but their lunches are kept and prepared in the same way a blended diet for a tube feeding child are, so that is addressing the risk of poor hygiene in the home preparation area, not its administration.

The administration is covered by it being part of the TAs job anyway, training by the gastro nurse and a disclaimer signed by the parent.

I did realise after reading it that the Blackpool paper was for oral feeding, but it may still be useful as one of the arguments/objections is ensuring adequate nutritional intake. This paper proves a good diet can be provided from blending food regardless of the method of administration.

From our own experience, it was the school who were massively in favour of feeding due to vomiting up formula. Awful for DGS and the other children. The SENCO said to the dietician (who was suggesting yet another type of formula) what's the point when we have seen how well DGS is on BD (DD was having to take DGS out of school to the nearby cemetery to feed him!)

I'm wondering if this is possibly a disabilities act and childrens act discrimination issue?

DF is contacting PALS today

you need an MP to take it up as a single issue.

it ought to be an option - not everyone will want to do it but if you can and want to it should be blessed not demonised....

why does blackpool support blending rather than buying in costly pre prepared formula food ? because it makes sense... orally versus down a tube - cant see much difference . (yes I know they get to taste the blend - but have you tried pureed roast dinner? )

It's weird definitely. But you should try my blended snack. Strawberries, summer berries, Greek yogurt, honey, almonds and double cream!

DF will carry on with the MP route I think. Awaiting PALS input. So crazy when one trust will do it an others won't.

Most infuriating thing she said was that the hospital and diatetic department refuse to give REASONS! They won't give reasons because she has an answer for every objection and they know it. Talk about one hand tied behind her back!